Thomas Megan M, Harrison Mark, Barnabe Cheryl, Ronquillo Charlene E, Avina-Zubieta J Antonio, Samson Anna, Kuluva Michael, Trehan Natasha, De Vera Mary A
The University of British Columbia and Arthritis Research Canada, Vancouver, British Columbia, Canada.
The University of British Columbia, Arthritis Research Canada, and St Paul's Hospital, Vancouver, British Columbia, Canada.
Arthritis Care Res (Hoboken). 2025 Jun;77(6):801-810. doi: 10.1002/acr.25487. Epub 2025 Jan 18.
Despite knowledge that health outcomes vary according to patient characteristics, identity, and geography, including underrepresented populations in arthritis research remains a challenge. We conducted interviews to explore how researchers in arthritis have used equity, diversity, and inclusion (EDI) principles to inform their research.
Semistructured interviews were conducted with individuals who 1) have experience conducting arthritis research studies, 2) reside in and/or conduct their research in Canada, and 3) speak English or French. Participants were recruited using purposive and respondent-driven sampling. Interviews were conducted over video call and audio recordings were transcribed. Template analysis was applied to interview transcripts to explore participant experiences and perceptions of EDI in arthritis research.
Participants (n = 22) identified that a lack of representation in arthritis research translates to the inability to provide comprehensive care. Participants emphasized considering EDI early in all arthritis research to effectively affect a study. Themes were categorized as benefits, barriers, and facilitators. The perceived benefits were the ability to generate knowledge and reduce health disparities. Barriers included mistrust from historically exploited populations, unintended consequences, lack of access to research opportunities, and logistical challenges. Facilitators included building community partnerships, curating diverse research teams, incentivizing researchers and funder support, and fostering humility in research environments.
Improving representation in research is needed to improve health outcomes for diverse groups of people living with arthritis. Identified barriers to EDI in research must be addressed and partnerships and supports must be facilitated to achieve more representation in arthritis research within Canada.
尽管人们知道健康结果会因患者特征、身份和地理位置而有所不同,但将关节炎研究中代表性不足的人群纳入研究仍是一项挑战。我们进行了访谈,以探讨关节炎研究人员如何运用公平、多样性和包容性(EDI)原则来指导他们的研究。
对符合以下条件的个人进行了半结构化访谈:1)有进行关节炎研究的经验;2)居住在加拿大和/或在加拿大开展研究;3)会说英语或法语。采用目的抽样和应答者驱动抽样的方法招募参与者。通过视频通话进行访谈,并对录音进行转录。运用模板分析法对访谈记录进行分析,以探讨参与者在关节炎研究中对EDI的经历和看法。
参与者(n = 22)指出,关节炎研究中缺乏代表性意味着无法提供全面的护理。参与者强调在所有关节炎研究的早期就考虑EDI,以有效地影响一项研究。主题分为益处、障碍和促进因素。感知到的益处是能够产生知识并减少健康差距。障碍包括历史上受剥削人群的不信任、意外后果、缺乏获得研究机会的途径以及后勤挑战。促进因素包括建立社区伙伴关系、组建多元化的研究团队、激励研究人员和资助者支持以及在研究环境中培养谦逊态度。
需要提高研究中的代表性,以改善不同类型关节炎患者的健康结果。必须解决研究中确定的EDI障碍,促进伙伴关系和支持,以在加拿大的关节炎研究中实现更多的代表性。